A New Approach to Living with Schizophrenia

I haven’t written a blog in a while, and the fact that I haven’t makes me feel like I have so much to unpack and say. For example, one of my Facebook friends posted about her husband with a “mental illness” yesterday, and there were dozens of comments about how “horrible,” “awful,” “painful,” etc. mental illness is, and she received loads of sympathy.

I get it. Psychosis is hands down the worst and most terrifying thing I have experienced. I get it that there are things that I have to figure out or forego or do in a different way than other people. I get that listening to someone talk about things that you know are delusions is difficult. I get that distorted thinking, anger, or whatever symptom a person might be displaying is hard. Yes, I’ve been there, done that, and no, I don’t want the t-shirt.

The thing is, I don’t like reading how “awful” mental illness is when schizophrenia is a part of my identity. When I came out five years ago and told family and friends about my diagnosis, I completely owned it. I started writing this blog, I started writing for mainstream publications, and I can’t think of a way that I could have put myself more “out there” and what I tried to say more often than not is, “Look, I have this illness and this is what someone with this illness goes through, looks like, experiences, etc.” And the thing I tried to say over and over again, is “I’m not that much different from anyone else.”

I wrote about my marriage of over twenty years. I wrote about being a friend, a daughter, a social worker, traveling, being a sister, etc. I tried to tell people that outside of schizophrenia, I am an average person with hopes, dreams, and desires. But the thing is, I never got past or around or away from the fact that I have schizophrenia, and it is every bit as much a part of me as my eyes, my feet, and my hands.

Is schizophrenia hard? Is cancer hard? Is diabetes hard? Is any disease hard? YES. They are all hard, but we never make them part of someone’s identity. And that is what I need to learn and tell myself. Schizophrenia is an illness like any illness. It impacts me, Rebecca, every day of my life. I have it. I feel it. I have to make hundreds of choices in my daily life to keep it from ruining me, but it isn’t me just like cancer isn’t my mom or stepdad who both have it.

I need to stop accepting schizophrenia as an identity that I own. It isn’t an identity. It is a disease. There is something abnormal about my brain. The brain of someone with schizophrenia looks different than a healthy brain scanned by an MRI. If I was someone who lied frequently, you could say, I have a character fault, but schizophrenia isn’t that either. There is nothing wrong with my character. It is my brain and the way it functions that is faulty, just like cancer cells don’t respond the same way healthy cells do.

I don’t know who I’m writing this to, you or me, or all of us.

If you think mental illness is awful or horrible or sad, that’s fine. Those words are true of almost every disease. Please don’t use those words to define or say something about me, though. I’m not awful, horrible, or sad, and I’m telling the world that at the same time I am telling myself.

An Identity Beyond Schizophrenia

I started an internship as a grant writer today. As many of you know, I have tried to go back to work several times, but I have always failed in one way or another. I loved the work I did today, and I think I can make grant writing along with freelancing work into a career.

I think I have mentioned before that I don’t want to be known as a woman with schizophrenia who happens to write. I want to be known as a writer who happens to have schizophrenia.

Please let that sink in a minute, because it is one of the most important things to me.

I am not only interested in mental health (although it is my primary interest). I am also interested in finances, relationships, lifestyle, architecture, spirituality and religion, and many other topics.

With all that in mind, I hope you will read my latest post on Medium called Rethink Retirement. Even if you aren’t interested in finances, I hope you will support me branching out in my writing.  The link is here.

I have many other essays and articles in the works, and I will share some of them with you as they are published.

We are so much more than our diagnosis!

Schizophrenia: We Just Might Catch You When You Fall

I can name at least a dozen people with schizophrenia that are doing remarkable things. Three of the people I am thinking about have started non-profits to raise awareness or funds for the treatment of the illness. One woman started a business; one woman is an actor; one man is an incredible artist, screenwriter, and father. Of course, many people with schizophrenia write about their experiences as is evidenced, by the number of essays and memoirs on the topic (including one I wrote that I wish would disappear because I could write something so much better now).

Maybe, none of the things I wrote surprise you about people with schizophrenia. Perhaps, you have always known that people with the illness could live productive, creative, meaningful lives. What you might not be aware of is the network that exists between some people who have the disease. I belong to a group on Facebook started by one of the founders of the non-profit, Stigma Fighters, and everyone in the group has schizophrenia or schizoaffective disorder.

It might surprise you to know that occasionally one of the group members will experience suicidal ideation and other group members will call them on the phone, talk to them, make sure they are safe, schedule check-ins, and possibly call someone in their area to do a welfare check, or if all else fails, call the police.

Recently, I was talking to my psychiatrist about talking to other people with schizophrenia in the middle of the night because they were hearing voices, or considering harming themselves. My psychiatrist was as surprised by this as I am. And I am surprised that we, those of us with the illness, provide this level of critical care to one another because it seems alarming to me that people that are considered by so many people to be incompetent in one way or another are reaching out, stepping up, and possibly saving lives.

Why do we do this? We do it because there is a big hole in our mental health care system. Seriously, think about the fact that those people who belong to one of the most stigmatized and vulnerable groups in society, step up and care for each other because often there is no one else to do it. We don’t have enough hospital beds; we have areas in the country that don’t have a single psychiatrist (psychiatric deserts), and the police are not adequately trained to handle mental health crises even though they are frequently the first responders.

I wanted to write about this reality so that people would be aware when they think of the illness of schizophrenia that many of us who have the diagnosis care for those who might otherwise slip through the cracks. It’s a broken system, and we are trying to patch it together and be a safety net one crisis at a time.

A Little Less Bad News May Make All the Difference in Schizophrenia’s Impact

Yesterday I read a short piece in Psychology Today (June 2019) called, “A Trick of the Mind.” The article introduced the words, nocebo effect, and the more common placebo effect regarding an experiment conducted by Brad Turnwald, a doctoral student at Stanford University and the lead author on the study they reported on.

The article was about an experiment where they told people that they were either predisposed to obesity or that they had a gene that protected against it. They tested the groups by having them exercise before they were given the genetic information and after. The people who believed that they were predisposed to obesity had a decline in performance on the exercise test after being given the negative information and the people who thought they had protection against obesity performed better.

Most of us are familiar with the placebo effect because we have heard it used in medications studies where people are given a sugar pill and feel better based on their expectations and possibly hope. I had never heard of the opposite, nocebo effect, though. Meaning those who are given negative information/expectations do worse.

When I received the diagnosis of schizophrenia, the doctor said, “I have bad news for you.” For over a decade I had lived with the belief that I had bipolar disorder and no one had ever said that was bad news. I had episodes of psychosis, and when I would fully recover, I would go back into the working world. I traveled and had lots of friends. I hiked. I played racquetball, practiced yoga, and I lifted weights. I had many friends and sat on committees for the city and graduated from an intense year-long leadership program. I regularly took classes to increase my knowledge or for fun.

My life looks completely different now. I have developed an anxiety disorder. I have a lack of motivation (different from being lazy), I can’t seem to find a job that I can manage (I apply for work regularly). I have fewer friends and am involved in far fewer activities, and the activities I am involved in are almost always things I do alone, like take a walk or write in journals. I have lost the motivation to make and keep friends.

I wonder if my psychiatrist had told me, “You have schizophrenia, but it isn’t going to make a difference in the way you live your life,” if that would have made a difference? I wonder if celebrities came out and said, “I have schizophrenia or schizoaffective disorder,” if that would make a difference? I can count the role models who have schizophrenia and are relatively famous (and only famous inside the mental health community, not the general population) on one of my hands. I can’t count the number of times I had read these words from parents when their child received a diagnosis, “Every parents’ nightmare.” I can’t count the number of times I have read that the average life expectancy of someone with schizophrenia is over 28 years less than the general population. I can’t tell you how many times I have heard jokes, seen stereotypes in movies and portrayed on the nightly news. I can’t tell you the number of negative messages I have had to filter through my brain and soul since I received the “bad news.”

I wonder, I really do wonder if the way we presented schizophrenia wasn’t so dire if people’s outcomes would improve? The studies done on placebo and nocebo seem to suggest they would.

 

 

The Words, “Be Kind,” Never Wear Out

This afternoon I was going to a used bookstore where I have $50 in credit from books I sold a month or two ago. I am attending a poetry workshop next weekend, and I offered to find odd books on hobbies for a poetry exercise that I encountered in graduate school and that helped me create my most widely published poem. The poem is about marriage and divorce, and I used fishing lures and tying knots as the metaphor.

The used bookstore is in a very congested part of the city, and we were lucky to find a parking space about five blocks away. As we were crossing at one of the lights, some young men yelled at me, “Hey, can I borrow your poncho?” And then they all laughed, spit food, and slapped each other on the back.

I wasn’t wearing a poncho; it is a handmade purple cover-up that my mom bought me on one of her many trips to Mexico. Nevertheless, I knew the young men were making fun of me.

I know that I’m not a fashion icon. When I was young, I tried very hard to be a unique and fashionable dresser. I often set trends or was way ahead of them. Setting trends and standing out in public is no longer important to me. I am happy I have clean clothes to wear.

When I was back in the car, I said to my husband, I wish I would have said to those young men, “Boy I bet your moms are proud of you for making fun of a woman who is probably her age, who has schizophrenia and often is overcome by symptoms and can’t leave the house.”

I didn’t say anything to those young men. I simply walked by while they laughed and jeered and congratulated themselves on being so funny. The incident made me sad though; it reminded me of how quick we are (within an instant) to judge people without knowing anything at all about them except maybe how they look (the color of their skin, the style of their hair, or how they dress).

As I get ready to eat dinner tonight what I am thinking about is how hard some people’s lives are and how we don’t always recognize or know each other’s struggles. Maybe, someone just lost a loved one. Perhaps, someone just lost their job,  their house, or is in the middle of a divorce, or recently diagnosed with a frightening illness.

I know we see it all the time, “BE KIND.” But how do those two words that are so powerful and said so often they have almost become overlooked play out in our lives? If you find that you easily make fun of people, try to shame them, or make snap judgments about them based on the least significant thing about them (appearance). Maybe you need a refresher course in the meaning of those two simple words. I got one tonight, and I’m not sorry I did.